Juxtaposed

Anneka Jane is 4 months old today. Her and I are in the emergency room. I wrote this post yesterday, not expecting today to be this way. Her fever is spiking 104 and won’t come down. She’s on oxygen. The nursing team has tried 4 times and failed to get an IV line in. They can’t place a catheter. Her hearts going crazy.

If you would pray with us, for this little girl whom we love so much, we would be so grateful.

She is affectionately Anna to me. Each morning Madeleine parades straight to Anneka’s swing, leans in and announces her sisters presence to me.

“Anna!”, she says with firm and perfect annunciation as she wiggles her fingers at her and marches on. This morning ritual is pure joy to witness. It’s sisterhood and the formation of a bond that will outlive me. I hope.

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Last week, after a hard day, I slumped into Russ’s open arm on the couch and crackled out a tearful, “I don’t want anything bad to happen to Anna.” These honest thoughts are hard to speak out because they are merely a trickle of internal floodwaters. When spoken, they are accompanied by wells of emotion that bust open reservoirs that hope and faith have dammed up.

I search for a theology that permits my reservoir of disappointments, fears, broken expectations and difficulties…..while fully embracing a faith that will hold up in spite of these mounting pressures…holding fast to a hope that will anchor me, even if the dam breaks. These feel juxtaposed. This is my current conversation with God, knowing he is greater than all the conflicts within me. Believing that circumstances do not define Him.

This is the picture of our past 4 months. Pure joy, pure concern. The tandem duo of light and darkness. Experiencing the undeniable presence of God in our story one moment, and having faith that He is still present in the most disappointing parts of our story, where no evidence is seen. This is where faith lives.

I didn’t hold her for the first day of her life. I have not breastfed her. She was taking a small amount of my milk from a bottle, now she takes nothing. Her heart remains broken and she is having open heart surgery November 20. Her reflux is brutal. We constantly watch her color, in case her heart failure escalates. I’ve asked God with faith for a different story on each account.

But the circumstances of our seemingly unanswered prayers are not evidence against God. In the fire, He is there.

Juxtaposed.

One morning I replaced Anneka’s NG feeding tube all by myself- with hardly any discomfort to her. This is usually a taxing feat with 4 hands and moral support. But I did it. BY.MY.SELF. I was steady, confident, careful. The tube went in beautifully, and I was able to secure it with a clean placement of the clear tape. I saved us a trip to the ER. I saved Russ a trip home. Anneka could be fed. Supermom.

The very next time Anneka’s NG tube needed replacing I had Russ’s help. It took me 3 passes and failures while I watched my precious girl suffer terribly, throw up and make awful noises as I lost my nerve and kept jamming the tube into her nasal cavity. I watched Russ grimace in horror at her pain, from my unsuccessful attempts. Finally, when the last attempt worked, I taped her face with trembling hands and the tape job looked embarrassingly nasty. Supermom.

The past four months have overturned all my expectations. Specifically, my expectations of myself, my abilities and my control over the unknown (I know, I know. *handslap). I have done things I never fathomed  I could do and watched myself- proud of my nerve, my faith, my tenacity. In contrast, I’ve also lost it. I’ve been less gracious, less faith-filled and more selfish than I knew I could be. I’ve been denied moments I thought were mine for the taking- and I let it get to me so hard.

After months of coaxing and coaching Madeleine to take her first independent steps, she finally took off….on her own! I was on a break from the NICU ‘gauntlet’-my affectionate term for the 3 hour NICU schedule of changing Anneka’s diaper, taking her temperature,  attempting breastfeeding or bottle feeding for half an hour, then holding her while milk is slowly fed to her via her nose tube, and lastly pumping milk for the next session. This gauntlet allows for a quick break and then is repeated. EVERY 3 HOURS. I was on one of those breaks when I saw a Whatsapp message from my Mom. It was a video of Madeleine awkwardly leaving the security of standing and venturing solo for a few wobbly strides, straight into my Moms arms. The adulation and importance of this moment was celebrated in my Dad’s praise “Walking….walking….She walked!!” And my heart was so proud of her I couldn’t help but cry.

Juxtaposed.

I know well and good, there are far worse things that could happen to a Mother than missing this moment. Truthfully, I didn’t even know I’d expected her to wait for me….until she didn’t. I didn’t stop to fathom that my arms wouldn’t be the destination of her first journey. Until they weren’t. I watched her big moment from the hard chair of the hospital cafeteria, on my iphone screen, hours after her expedition occurred. And that was so unexpected.

I love that Madeleine walked to my Mom and I’m beyond grateful that my Dad captured it beautifully on video. It’s a pure thing. It takes a village. But I do wish I’d have been there. I’m here now. She runs now….dances and navigates all kinds of challenges on her feet. It’s wonderful.

My joys have been continually contrasted by hard. And some days have felt impossible. Other days, impossibly perfect. Nothing looks the way I thought it would.

Only one preexisting expectation has remained. The gracious, powerful and ever-present love of God remains. He waits in the quiet moments of ‘nap time’. He gives me courage to try again- NG tube in hand, hysterical daughter on the table, prayerful husband by my side. He turns down the volume when I allow my heart to ‘tune in’ to the countless fears that threaten the future. And He will remain, even if the worst fears become reality.

God holds us together…

…when Madeleine is inconsolable because I won’t allow her to play in the toilet, or draw her masterpieces on the wall in pen, or throw a ball at Anneka point blank.

…when Anneka’s eyes are red and she is gagging up her milk and medication once again, while struggling to gasp a breath and filling her pants at the same time.

…when it’s 6pm and dinner is not started yet and all options remain frozen.

…when being a Mom feels unfair, unrewarded, unnoticed, unRachel, un-everything.

…when the simple things have become complex gauntlets. Like breastfeeding.

…when love is embodied in the practical, rather than the romantic.

He is holding me together. When things are so closely juxtaposed. So good. So hard.

I’ve done many hard things in my lifetime. I’ve dealt with things…and I write this in humility, not intending sensationalism. I’ve stood up to demons-possessing a teenage girl. I’ve embalmed a young mans body by the light of a few paraffin candles- unthinkably beaten to death in Uganda. I’ve held the tiny feet of a stuck footling breech baby in the backseat of my car. I’ve narrowly escaped a mosque in Pakistan during Ramadan that I was invited into in error- a mosque notorious for anti-feminine sentiment. I’ve survived a fatal bus accident in India and I’ve buried children that I’ve loved. And I confidently say that motherhood IS hard.

Giving birth and giving life is not a small or unmentionable vocation. Be it a baby, a dream, a cause, a calling. These are wrought with unfulfilled expectations. And filled with purpose at the same time. We step into the knowns and unknowns and we emerge with scars- not just on our bodies. But we emerge with a story. We choose to narrate it as our own….or as God’s story.  I’m choosing to be in His story….taking my hands off the clay of life and sliding into the potters wheel to be in His perfect hands.

I’m thankful He holds us. Otherwise, we would have fallen apart. But we are here. 4 months in.

Oh….and she is a masterpiece.

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Shoulders

shoulders

“If I stand tall, I’m standing on the shoulders of those who have gone before us.”

-African Proverb

I write this post with tears streaming down my cheeks…a grieving of injustices and tragically misguided understanding of the value of life for those with Down syndrome. And as I reflect on the future I expect to give my daughter, I also weep from the overflow of gratefulness for those whose shoulders I stand on. I pray that my participation in history will create a better world for future generations of children living with Down syndrome.

History is fraught with evil. Yet, in its time, evil is often disguised as ‘an educated view’ or the ‘moral choice’. Only later, after much suffering, is evil exposed and those who choose NOT TO DO NOTHING rewrite the story for future generations. The history of Down syndrome is not void of such tragic deceptions. However, its history is neither void of ordinary people, who took the pen out of evil’s grip and began to write a better story.

Elimination preceded discrimination. In early Spartan days, infants deemed to have a disability were barbarically thrown off cliffs in an effort to improve their race by the elimination of less-desireable genetics. A similar Eugenics movement was birthed in America during the early 1900’s and children with Down syndrome were being killed or sexually and physically abused through compulsory, federally funded sterilization. These atrocities in America, gave inspiration to Hitler’s ‘life unworthy of life’ indoctrination and early genocide of 200,000 people with disabilities using lethal injections, starvation or gas chambers. Most of the victims had Down syndrome. Little girls, no different than my daughter, would be deemed unworthy of life, murdered shortly after birth or grossly abused, merely for being differently-abled.

Although the Eugenics movement lost momentum, the prevalence of asylums and the institutionalization of the mentally disabled was the acceptable norm. Children with Down syndrome were immediately removed from new mothers and in some cases, Father and Doctors would deceive the mothers by telling her the child had died, when in fact, the child had been abandoned to an asylum. Even the most prestigious of institutions were draconian at best. Once, Senator Robert Kennedy visited a particularly sought after institution, Willowbrook, and referred to it as a ‘snake pit’. Medical experimentation, unsanitary conditions, isolation, prison-like restraints, gross abuse and unmarked graves characterized these facilities. In the mid 60’s the norms of institutionalizing the mentally ‘retarded’ began to shift; sadly,  it would take until the mid-1980’s for this horrific chapter to close.

During the early 60’s, a number of families refused to have their children abandoned to ‘snake pits’. These families chose to raise their little ones with Down syndrome themselves in the hope they could offer their child a better future than an asylum offered. Families who chose this path were explicitly denied the support of government, medical or educational resources to assist with the care of their child. In a time when accurate information about Down syndrome was scarce, resources were non-existent and discrimination was still high, these families refused to believe their children were unfit to be raised at home. Instead, many families began support groups in the basements of churches, community facilities and homes. Out of this emboldened group of people, The ARC was born-a grassroots movement to change perceptions of children with Down syndrome.

And then, in 1960, a woman named Kay McGee gave birth to a daughter with Down syndrome, Tricia. Instead of allowing her daughter to be taken, her and her husband Marty took their daughter home against the advice of doctors and embarked into a world with little to no support. Kay began to network with others who had also deferred institutional care for their children and on the shoulders of these brave families, she pioneered the National Association for Down Syndrome. Kay rallied people together for the cause and connected professionals with parents to close the information gap surrounding Ds and she coordinated therapeutic interventions for children with Ds. Kay would visit hospitals to plead with the staff to notify her when children were born with the syndrome so that she could reach out to the family and provide the support she had never had herself. Today, NADS is still transforming the story.

Up until 1984, medical practitioners could refuse life-saving surgeries for children with Down syndrome; instead, many doctors would mandate starvation as a method to do away with these little ones plagued by health complications! This story is shared on the NADS website:

In 1982, a Bloomington, Indiana baby with Down syndrome, known as Baby Doe, was born with esophageal atresia. Because the baby had Down syndrome, the parents were encouraged by their doctor not to give permission to operate. When word of the situation became public, a dozen families came forward and offered to adopt the baby. The offers were refused. The parents, their doctors, and the Supreme Court of Indiana said they had the right to starve the child to death. The baby died seven days after birth, before the U.S. Supreme Court could hear an appeal to the Indiana decision. This case and that of Baby Jane Doe in New York outraged advocates, who worked tirelessly to get the U.S. Congress to pass legislation in 1984 prohibiting the withholding of “medically indicated” treatment from any child born with a disability.

I was born in 1982 so I can’t help but sit here, my fingers trembling at the keys of my computer, my eyes misty and my daughter within me is tracing my right rib cage with her toes in an ungraceful fashion. Russ and I have the immense privilege to be served by a leading pediatric cardiology facility and team, whose patients are often children with Down syndrome. There is no trace of discrimination among the team of professionals and it is evident that their aim is to provide our daughter with the most high-tech, effective and life-giving operation that is within their power to give. Yet, in MY LIFETIME, this was not the case for so many like our little one.

The tireless voices…the brave actions…the relentless forward movement of this story, by those who chose not to sit in silence while evil prevailed, but who chose to confront the evil of their time- these are the men and women on whose shoulders I stand. Pluto and Aristotle spoke out to give publicity to ‘feeble’ infants rather than the shameful elimination of them in ancient Greece. The Kennedy brothers used their power to reveal the atrocious conditions of institutions and enable research for Down syndrome. Countless journalists and doctors refused to be silent when society had accepted evil as a norm. Families chose not to allow institutional care to swallow their children. The unnamed fathers and mothers who reached out and offered counsel and support to other families with Ds. Kay McGee and her successors at NADS, who continue to fight for equality, care and the celebration of children with Down syndrome. The advocates who didn’t sit still when Baby Doe was being eliminated and changed the law in favour of a better story. And many others who have influenced better care, education and life for children with Dd. These are just a few mentions in a very tall pyramid of shoulders that I stand on.

The day after we received our daughter’s likely Diagnosis, I unwrapped a beautifully assembled wicker basket we had been given by our genetic counsellor. It was Beau’s Basket- a young boy with Ds whose mother instigated the creation and delivery of these stunning gifts in an effort to influence the tone of a Ds diagnosis with as much celebration and joy as can be communicated without words. Inside the basket was a hand-crocheted pink baby blanket, a stuffed monkey (with a name tag- ‘Ollie’- heart-warming because our dog’s name is Ole), a few toys, blankets and a beautiful handmade beanie/toque. There were resources galore! Handouts, books, notes of encouragement and a photo of Beau and his beautiful family. There was a card in the basket with a number to call for the support of a community of people who had walked this road before us. Whose shoulders we could stand on.

When I called the number on the card, one of the most friendly voices I’d ever heard answered my call. Her name is Susan. I am sure I just rambled out the initial facts of our story in an attempt to explain my call. She was the first person I spoke to about our baby’s diagnosis, aside from my parents and the staff at the hospital. Her first response was one of celebration, “Congratulations!” She put me at ease by explaining her own story of having a 15-year-old daughter, who was born with Ds and whose diagnosis they found out at her birth. That Saturday, only 3 days following our diagnosis, her and her husband, Tony, invited us to their home where a couple other families with Ds were stopping in to meet us as well.

I will never forget walking up to the door of their home. I hadn’t met a child with Ds for as long as I could remember and I was nervous because I feared my face would betray me and give away the disappointment I would feel in realizing what my own daughter would be like. I won’t share her name to protect her, but when the door opened, a charming, welcoming and energetic young girl met us with oodles of enthusiasm. I was in fabulous shock. This was not the picture I’d had in my mind of what Ds would look like. We met two other children that day, a two-year-old boy and an adolescent boy- both equally disturbed the preconceived ideas I held for what our future would look like. These three families made us feel like their family. They shared their stories and offered encouragement as we were initiated into this tribe. When the door closed behind us and we made our way back to our vehicle, our hearts were light. I remember feeling speechless by the experience, these kids are amazing I thought. We had experienced such love at their home.

In just a short visit, we had learned that the bright 15-year-old young lady who had met us at the door, was attending general-ed high school and had learned to sing in key (a difficult feat for many kids with Ds). She confidently talks, twirls and communicates with a bursting desire to share her stories. Her mother, Susan, founded the Down Syndrome Connections North West non-profit, which connects families with Ds in our area. She pioneered this group with another Mom and their aim is to create a touch-point of connection for families like ours within the first year! One of the most memorable things she told me that first day, was that the story has come a long way in a short time and that children being born with Ds today, have far greater access to developmental therapy, integrated education and future opportunities than the past generation. What a different story we get to live in today, because of the ordinary warriors whose shoulders we stand on. Warriors like Alaina Stevenson, whose baskets in her sons name, have become the positive narrators of a story which families, like us, find themselves in. Although she treats me as a peer, Susan is a giant to me. She has allowed me to climb up onto her shoulders and see a greater future for my daughter than I ever thought possible.

I am hopeful, that my shoulders will one day be a starting point for another and that I can tell a story which creates a stronger tomorrow- because the story of Ds still needs people, who will not stay silent when evil prevails. I am so grateful for those who have done this for my little girl. Thank you, thank you, thank you.

Here is one such woman, fierce and brave, speaking out and confronting the new wave of modern day eugenics, enabled by Non-Invasive Prenatal Testing, before the United Nations.

Rachel

References:
http://www.nads.org/about-us/history-of-nads/
http://www.cdadc.com/ds/a-history-of-kathryn-mcgee-and-the-founding-of-mdc-and-ndsc.html
http://www.healthcaredailyonline.com/world-down-syndrome-day/
https://www.globaldownsyndrome.org/about-down-syndrome/history-of-down-syndrome/down-syndrome-human-and-civil-rights-timeline/
https://www.thedailybeast.com/living-with-disability-in-the-dark-ages
https://www.thearc.org/who-we-are
http://www.dsconnectionsnw.org/index.html
http://downsyndromeuprising.blogspot.com/2013/07/a-brief-history-of-down-syndrome-part-7.html

 

Name

Names

(Although a beautiful name, we are not naming our daughter Eve. There may be confusion because this blog is called ‘eveschronicles‘…so please read Who is Eve?to find out why. On with the reveal.)

A name is full of meaning and can be powerful, so choosing a name for our daughter has been something we’ve spent much time discussing. Hilariously, Rachel means ‘little lamb’ and Russ means ‘fox-coloured (red)’. So this lamb and her fox have been keen to identify our daughter without reference to the animal kingdom!

We are naming our precious girl Anneka Jane.

Anneka means Grace, one whom ‘God has shown Favour’

Jane means ‘Gift from God’

These two names hold a vault of meaning to us. Firstly, my sister is Jani Ann. She is the second born girl in our family, my slightly younger sidekick and best friend growing up. Today, she is a woman I am very proud to be so closely related to! She carries a sassy passion for life and music in one hand, and a fierce compassion for people and the marginalized in her other hand. We share a memory bank of stories from each chapter of our lives and throughout, I’ve always called her Jane. Anneka Jane is a play on her name, in her honour. Jani Ann.

Secondly, the meaning of these names hold great depth for both Russ and I. I was raised in the church and the concept of God’s grace was not unfamiliar to me throughout my early years; yet grace has become the cornerstone of my life over the past decade in a way that has brought power, peace and joy to my life in a redeeming way. It was grace that touched my young heart and brought me to my knees at a tender age where I recited a version of the sinner’s prayer. Over the years that followed, I allowed the perfection of Grace itself to be muddied by natural laws of earned favour, performance-based approval and self-righteous merits. Striving persisted into the post-prodigal chapters of my adulthood. My desire to gain favour with God was fervent, but the road I believed would lead me there was merely a gauntlet of service, prayer and study. I was constantly examining myself and my eyes were fixed on me.

The narrative of ‘try harder, pray more, sacrifice greater, serve further’ was the undertone in what I heard from pulpits and read from the Bible through my ‘works-based’ lens. The questions mounted and stole confidence from my secure place in Christ. Was I doing enough? Could I do more to secure God’s love? Was I worthy of heaven? Could I lose my salvation?

This thinking becomes detrimental to grace. My belief that I had to work hard to retain my place in God’s ‘good graces’, produced in me a self-righteous arrogance for putting in the ‘hard work’. Religious entitlement tainted my perspective as I took on a ‘justice-seeking, sell-all-and-give-to-the-poor missionaries’ identity. It pains me to admit this, but it was easy to believe that somehow I was more pleasing to God than others, because I had taken certain steps of faith and given up a cushy existence, to serve children who were orphaned and HIV positive, in Uganda. I’d believed that a missional lifestyle would secure my place with God, and I rested in my own works. Such false security.

This religious theology of “earning grace” can so easily cross over to the belief that if we are ‘good‘ people, we are accepted by God. In fact, this concept has so deeply influenced our society, that mainstream thinking promotes the concept that being ‘good’ IS the path to heaven, for those who acknowledge there may be a heaven and hell. I believed this too, just in a slightly more ‘churched’ construction. After all, it can seem difficult to embrace that God is Love AND that good, charitable and kind behaviour in itself is not the way to heaven.

The biblical parable of the man with two sons sheds light on two stances in life that have kept me from receiving God’s grace. One son is recklessly sinful, choosing a scandalous path far from the Father’s house. He is the picture of unrighteousness. The other son is impeccably good, choosing a life of service in his Fathers home, believing he was earning his place. He is the picture of self-righteousness. Yet the beauty of the parable is seen in the Father. He does not shun his unrighteous son but waits in constant anticipation for his return. Equally, He does not reward the self-righteous son in relation to his service but hopes that this son will realize all that is already rewarded, by virtue of sonship, not servanthood. He offers each an identity which is intrinsically based on their identity to Him and is unrelated to their behaviours/track-records. In the same way that Jesus did not have to sin, to become sin…..we do not rely on behaving righteously, to become the righteousness of God. And yet…this gift of God’s righteousness compels us to be like God as we embrace His identity for ourselves.

“For He made Him who knew no sin to be sin for us, that we might become the righteousness of God in Him.” (2 Corinthians 5:21)

This grace. The grace that changed me, changed my wants, transformed my desire, reiterates over and over to me WHO I AM…..because of WHO HE IS. This grace, this Father, who waited patiently while I rebelled, while I grasped for life in futile efforts- He waited for me without imputing my wrongs on me when I returned to Him. This Father, who saw my good deeds, who watched me proudly strive, sweat and bleed in the service of the poor, hurting and orphaned in His name. He saught me out….reminding me of my true worth- apart from my service. He lit my heart up to serve, from a place of confident identity in Him, rather than in my effort to gain a place with Him.

And now, each day, I live with the knowledge that I am not good, apart from God. But I am a daughter of God, a woman who is accepted because of Jesus gift that I’ve humbly received. This identity comes with the confidence that I am not condemned; rather, I am standing right before God because of Jesus. He is the WAY to God. And in light of this truth, my heart, feet and mind align with Him and I’m continuously being transformed by this identity to look like Him and reflect Him in this world.

I need God’s grace and favour every day, as I look ahead to raising Anneka Jane. And, I want her to know (and Madeleine for that matter) that her identity is not qualified by her abilities nor tainted by her different abilities….but her identity is firmly established by Jesus. He is able to set her feet on solid ground, to welcome her to walk on the waters of life, to lavish her abundantly with health, hope and dignity and He calls her His beloved.

I believe the same grace is for you. Good, bad….or somewhere in-between. Regardless if you strive to be good or strive to find life far from God- His love is for you, His identity is offered to you. Because none of us is perfect on our own, the perfect standards of God were accomplished for you by Jesus- who IS Grace. Hide in Him…..and you will find LIFE ABUNDANTLY

Anneka Jane is already a gift from God. She will carry a name that speaks of the Grace and Favor promised for her….and luckily, there is no reference to the animal kingdom in her name!

We get to meet her on Thursday!

Sharing

It was time to share our news with our families and friends. Having undergone the feelings of shock and concern in our own hearts, it was time to feel the tremors of those feelings in the faces and voices of those we loved. I carefully crafted a message to send out, which explained the diagnosis:

Hi Fam!

We have had some news on our little baby that we want to share.

Firstly, we are having a little girl…so Madeleine is getting a little sister!

Secondly, we had some genetic testing done and just found out that we are having a special girl…. a little girl who has an extra chromosome, also known as a baby with Down Syndrome.

I’m sure you can imagine the news was shocking and it’s still pretty fresh. We are on a rollercoaster of thoughts, feelings and looking forward holds many uncertainties. At the same time, we have some pretty neat experiences that show us God has this little girl in his hands and in His perfect plan for us…and we are both trusting Him to provide all we need for the journey ahead. We are still very excited to have our second baby on her way.

The syndrome is not caused by anything Russ or I could have had or passed on….it’s just a freaky, fluky situation that causes her to have three rather than two of the 21st chromosome.

We know many of you might not know what to say to us about this… I’m not sure I’d know what to say either. Please consider that we are both adjusting to the news ourselves and have a lot to learn about Down Syndrome.

We know this baby will bring her unique design to our whole family…. including you, and there’s a great/short book called “Your Loved One is Having a Baby with Down Syndrome” that’s free to download here: http://downsyndromepregnancy.org/book/your-loved-one/

It’s got some great info on Down Syndrome and a few great tips on responding to our news that would really help in protecting our hearts as the news is shared. 😊

One specific one is that we’d really appreciate if you could avoid saying ‘I’m sorry’. Even though we are adjusting to this diagnosis, it’s not something to be sorry about because Russ and I are very happy about our having this little girl.

So that’s the big news…. the second little Hegedus girl is making her way to us…and already in our hearts. We trust she will be a blessing and be a source of joy to our family!

We love you guys and appreciate your love and support,

Rachel & Russ

As I pressed send, I imagined what my brothers and sister were thinking as they read. I waited for the first reply… and made bets with myself who it would be. My Mom. Sure enough, she was quick to respond. I had called her the day we got the news and she and my Dad had felt the surprise with us in real-time. My Mom said the same thing then that she had said to us when we surprised her and my Dad with news I pregnant with Madeleine (and not married or even engaged)….”Every baby is a blessing”.

The replies began to roll in…. and with them a healing balm that smothered my heart in the vision of our special little girl being a part of a family who wanted her and was waiting with arms wide open.

My sister and I are the only two girls in my family and she replied right behind my mom:

Chris and I are sending a mountain of love to you all as you adjust to this big news! Every good and perfect gift comes from Him. I know the love you have for baby girl number two will be shared by all of us, and it will cast out any and all fear. You know, two girls in a row sounds familiar… And those second borns, while strange, can be pretty awesome!!! Thank you for sending along the booklet, I’m looking forward to reading it and learning more, but especially to shower this little darling with all the love in the world!

The replies came in steadily, each with a unique stamp of love from each brother and their wives. I sent a similar message to a handful of my dearest friends far and wide, and their replies were equally affirming. As the news began to feel more public, I could feel the sense of a strong community around us, and the feeling of being alone vanished.

My sister caught up with me the next day and she had spent her night binging on YouTube vids related to Down Syndrome! She had watched all the same ones I had and she had sourced a number of local groups and organizations to support us. I could feel her saying, I may not be close in miles, but my heart is where you are and I’m here for you.

Our daughter has an amazing family to thrive in. I can’t wait to introduce her to them.